Tag Archives: treatment

Dear new doctor…actually scratch that formal dear business

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You can read an updated, more universal version of this piece over at The Mighty.

I read this article written from a doctor’s perspective earlier this week and while none of it was a surprise to read, it really resonated with me. Since having recently learned that my family doctor of 23 years is retiring at the end of this year (with no one to replace her…eek!), I’ve been thinking a lot about the whole dynamic between doctors and chronic illness patients. So, of course, I put those thoughts into words.

Dear new doctor,

…Actually scratch that formal “dear” business. I tend to use a more familiar greeting when writing letters to anyone who is privy to the inner workings of my intestines and my ovaries…because of course I write a lot of letters to people about those very topics and thus have determined that a more familiar greeting is appropriate…

You don’t know me yet, so let me just clarify that I’m kidding. I don’t actually write letters to people about such things.

So anyway!

Hi new family doctor!

I am sincerely pleased to meet you. Even though I’ve seen a lot of doctors before you, I’m excited by the possibility that you might have ideas and options for me that no one has ever mentioned.

I’ve got to say, though, I’m also rather apprehensive.

You’ve probably noticed by now that my chart is fairly…uh…lengthy…and you might be wondering what you are getting yourself into by accepting me as your patient. I’m not the kind of patient that can be easily fixed and I know that can be really disheartening and frustrating. I get disheartened and frustrated, too. Look at that! We have something in common!

Here’s what I want you to know about being my doctor.

I don’t expect you to already know much about my illnesses, and actually it’s very possible that right now I know more about them than you do. Please be okay with that. Consult the internet or talk to other doctors to learn more if you want, but when it comes to understanding how my illnesses affect my life, talk to me. And even if you are already familiar with managing these conditions, don’t forget that my body didn’t read the textbook chapter on “how to have gastroparesis, POTS and EDS” before it decided to get sick so it might not follow all the rules.

Keep in mind that the 10 minutes in which you see me is just a snapshot of my life. You might see me at my best or you might see me at my worst, but most of the time you’ll probably see me somewhere in between. Please don’t make assumptions about how I am doing based on whatever snapshot you happen to capture that day. Just as my frown does not imply the presence of depression or defeat, my smile does not imply the absence of worry or pain. I smile a lot. I laugh a lot. But I still understand my reality, and I need you to understand it, too.

You might be scared of me because I have a chronic illness, but you should know I’m scared of you for the same reason, because I have a chronic illness. I’m scared you won’t trust my instincts and will treat my concerns as overreactions. I’m scared you might confuse not being able to fix me with not being able to help me at all and then give up. I’m scared you will think I’m lazy or just not trying hard enough. You see, I can be as well-informed, empowered and proactive as I want, but I have no power. I can’t prescribe meds, order tests or make referrals. I need you for that. I have the day-to-day-living-in-this-body experience thing going for me, while you have the foundation and education, and you have the years of experience treating other patients. I know that you can see things I can’t because you are not living it day to day, and I respect that. I hope you will try to see things through my eyes, too.

I know that you are human and I promise not to hold that against you. I know you make mistakes and I’m okay with that. Sometimes I’ll catch your oversight, but that doesn’t mean you aren’t doing your job as my doctor, it just means that I’m doing my job as a well-informed patient. I know you won’t always have the answers and I’m okay with that, too. I don’t expect you to know everything, but please be honest with me about it instead of giving me a confusing and round-about answer. I also know that you won’t always be able to help me. Sometimes at the end of an appointment you will feel helpless. That’s okay. The next appointment will be better.

But I’m human, too, and sometimes I get defeated. Because I know that things could be worse, sometimes I forget that I’m allowed to wish things were better. And sometimes I stop fighting for them to be better. I lose hope. I need you to fight for me when that happens. Remind me what determination and perseverance look like.

Please know that I will always appreciate you giving your time to help me. I know it’s your job, but I’m grateful all the same. I see a lot of doctors, but I know that you are the one with the most comprehensive view. You are the one looking at the big picture and you are the one keeping me from falling through the cracks. I know there will be lots of trial and error, confusion, and paperwork…and I’m really sorry about the paperwork…but there will also be successes and milestones. And joy. No matter what is happening, no matter how sick or healthy I am, I promise you there will still be joy.

That doesn’t sound so bad, right?

Oh, and just in case it helps, I also come with a free supply of dishcloths, hats and scarves.

Out came the snowman sweater

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This past month has been a stressful medical marathon. Four weeks ago I had my old central line pulled due to an infection. Unfortunately, the new line that was placed was not done so properly so three weeks later it was falling out and I underwent yet another line placement. Add in a whole whack of appointments, ER visits, new medications, unwanted side effects and the usual relentless symptoms day and night, and life has been really wearing on me lately.

I think you know by now that I like to put a positive spin on things. I do my best to have a good sense of humour about everything…and by everything I mean all of the random, weird, gross, random, frustrating and random stuff that comes along with having a chronic illness. Much of the time this sense of humour is not for anyone else’s benefit, but for my own. I laugh things off because if I didn’t I would probably drown. The weight of it all is too much to carry day in and day out and I keep things light so that I can keep my head above water. In reality, though, there are days when I do carry it all. There are days when it all becomes too heavy and too real.

Yesterday was one of those days.

After my line was pulled because of an infection, it never healed properly. Multiple antibiotics later, it was still looking really angry and becoming more and more painful. I was getting really concerned and was ready to call my doctor this morning, when last night I was poking around in the wound and I saw something strange.

It was the cuff. It was a piece of my infected line that had been removed four weeks before. Apparently cuffs are occasionally retained when lines are removed and apparently they often don’t cause any problems. I don’t know what the protocol is when the site is infected, and I don’t know if they’re supposed to inform the patient about any of this…what I do know is that for four weeks I had no idea the cuff was still in there and that it was the reason my infection was getting worse and not better.

It takes a lot to rattle me. I have tubes pulled out of and shoved in to me without any sedation on a fairly regular basis, and I deal with these tubes at home every single day. But pulling out that cuff? That definitely caught me off guard!

To be perfectly honest, it scared me. Most of the time I don’t really dwell on the fact that I have this scary thing in my chest. I don’t focus on the risks associated with it, the extra hassle it adds to my life, and how as much control as I’d like to have, ultimately I have to trust someone else to place it and remove it. I hate that I have not just one, but two tubes in my body that, as the result of an unlucky tug or less than vigilant care, could land me in the emergency room with no notice. I hate that, but that’s overwhelming, so most of the time I just don’t let my head go there.

Sometimes, though, I can’t help it. Sometimes the unpredictability, uncertainty and maintenance piles up and becomes too much. Last night it was too much.

I stood there in the bathroom, tweezers in hand with blood dripping down my chest while I struggled to stay upright as I waited for the nausea meds I’d taken over an hour earlier to kick in, and I wanted to cry. All I could think was, “I don’t want this to be my life. No thank you. I need a break.”

So I took one. Sort of. There is no such thing as a break from chronic illness. When the problem is family, work, school, whatever, you can escape for a while, but when the problem is your body there is no getting away from that. Instead, you have to settle for a sort-of break.

For my sort-of break, I took the night off from TPN. There were still tubes coming out of me, of course, but for the rest of the evening I was able to move around without hauling an eleven pound backpack along with me and I was able to sleep untethered. It was a good start, but when I woke up this morning I was still in need of cheering up. Too sick and tired to go anywhere or do much of anything, I went to my default happy place: Christmas. Out came the snowman sweater…my crochet-embellished-tacky-Christmas sweater.

I’ve been wearing it all day! And yes, it is making me happy.

I know that I’ll bounce back because I always do. I know that soon enough, whether it be a day from now or a week from now, I’ll be able to laugh again at the random, weird, gross, random, frustrating and random things that happen. Everything overwhelming me right now will go back to just being my norm.

In the meantime? I’m just waiting it out in my tacky sweater.

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Most of this post was written on Tuesday and now that it’s Thursday, I can tell you that I am bouncing back. The weight of it all doesn’t seem quite as heavy for now and I’m able to find things funny again. I considered not even posting this now that I’m feeling less overwhelmed, but the thing is, all of that exhaustion, fear and distress are every bit as real and present in my life as the silliness, the humour and the acceptance, and I think it’s important to share that.

I also know without a doubt that I am not the only one feeling overwhelmed by life right now, so I just want you to know that you’re not alone in that. I want you to know that it’s okay to need a break and it’s okay to take one.

I also want you to know that it’s okay to wear a snowman sweater when it’s still summer. Now, I can’t imagine why you wouldn’t have your own snowman sweater, but just in case you don’t, here’s some winter whimsy to tide you over until you get your own!

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Dysautonom-a-what?

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This is basically an appendix/addendum/supplement/whatever to the post “Have wheels will travel.”

While writing that post, I realized I haven’t really written much about dysautonomia so if you’re unfamiliar with the condition you might not really know what I was talking about. As it turns out, it’s a lot harder to provide a brief description of dysautonomia than I thought, at least for someone like me with a tendency to ramble. In an effort to avoid publishing a novella, I’m posting this piece separately for anyone who wants to know more.

Okay, so let’s chat a little bit about dysautonomia.

Dysautonom-a-what?

Dysautonomia is a fancy word that is unrecognized by any spell check program to describe a dysfunction of the autonomic nervous system (ANS). When you’re thinking about which functions are autonomic, think automatic. The ANS is in control of all of the things that go on in our bodies without us even thinking about them, things like heart rate, blood pressure, digestion, respiratory rate and temperature regulation. You can probably imagine, then, that when this system becomes dysfunctional a lot of chaos can ensue!

There are several different subtypes of dysautonomia but there is a lot of overlap between them. Specifically, I have POTS (Postural Orthostatic Tachycardia Syndrome) which as the name implies means that when I’m upright (orthostatic) my heart beats inappropriately fast (tachycardia). That literal explanation, however, makes it sound way more innocuous than it actually is.

Because of my POTS, I have a really hard time standing, walking around and just being upright for too long. Our bodies are constantly making adjustments in order to keep everything in balance. When we stand up, our bodies make even more adjustments to counteract the effects of gravity. When I stand up, my body doesn’t make all of those necessary adjustments. Blood pools in the wrong places, my brain doesn’t get enough oxygen, my cardiac output drops, my blood pressure becomes oftentimes unreadable and my heart rate jumps way up. Objectively speaking, this is what being upright can look like:

Dysautonomia looks like thisBP Monitor (8)BP Monitor (11)

As for how it feels? It feels rather terrible. If you’re with me when this is happening you will actually see the colour drain out of my face. I get lightheaded, dizzy, nauseous and shaky. Oftentimes I will get this ache in my gut, as if someone punched me in the stomach, and it forces me to bend over. My ears might start ringing, my vision might go blurry, and then there is like this force trying to pull me down to the ground. When your ANS is dysfunctional it’s also really easy to experience sensory overload. Situations that involve a ton of noise, a ton of people or a ton of frenzy can overstimulate the ANS and thus trigger a lot of the symptoms, sort like poking a sleeping bear.

Not every day brings vitals quite that wonky, of course, but every day brings symptoms and some days these symptoms make it almost impossible to be a functional human being. You know when you’re recovering from the flu and you just get zapped of energy anytime you try to do anything? After a few days of lying on the couch you decide to get up and be productive, then after 10 minutes you’re exhausted, you feel so sick and you end up back on the couch. It’s like that, except you’ve also just donated blood, you’re dehydrated and you’re being forced to run on the spot. It’s basically as fun as it sounds.

There are so many symptoms associated with POTS and dysautonomia and unfortunately they are not just limited to an upright posture. The tricky thing about POTS is that it is not an actual disease, rather it is a syndrome, a cluster of symptoms. For example, if someone is experiencing nausea, heartburn and abdominal pain, there could be any number of things going on and causing that set of symptoms. It’s a similar situation with dysautonomia; there are so many different possible origins, including autoimmune, genetic and viral, and in many cases the cause is idiopathic (which is a fancy medical way of saying “this is what is wrong with you but we have no idea why”). So many patients have multiple health issues which can make it really hard to tease out what exactly is going on.

There is no cure for dysautonomia but there are treatments that focus on symptom control. Many of these treatments involve lifestyle modifications but there are also some medications available to help control heart rate and blood pressure. As no two patients are the same, each patient’s management plan might look different. Personally, I am in the middle of trying to figure out the right combination of things that will result in the most improvement with the least amount of side effects. It’s a very fine balance!

And there you have it. That’s the best I could do in 800 words, but in case you are more confused now than you were 800 words ago I’m going to leave you with links to some excellent resources!

For more information about POTS and dysautonomia, I recommend checking out The Dysautonomia Information Network or Dysautonomia International. And for more information about day to day life with dysautonomia a few of my favourite blogs are Living with Bob, Just Mildly Medicated and Let’s Feel Better.

And finally, since the whole purpose of the appendix (or addendum or supplement or whatever) was to help you understand why I sometimes use a wheelchair, let me take you back there now!